For About and By Caregivers

A Year of Alzheimer's

By Elisa Lewis 

“It’s a Puh.. Puh… Puh… word.”  I desperately explained to my husband. He turned his head away from me and walked into the other room. I stood there alone, bereft, defeated, feeling the tears burn through my embarrassment and frustration.

It wasn’t the first time. This had become more and more prevalent in our lives. Being unable to communicate was common lately; a turn in my life that was unexpected and completely foreign. It changed everything. And it was getting worse. I was so frightened I was becoming paralyzed, isolated, and ashamed.

The last few years of my life had been full of exciting life altering events - some better than others. There were highlights and low times. For five years, after having had a long career as a healthcare administrator, I had been operating my own business as a geriatric care manager. As with any new business it would take time to grow, which gave me the opportunity to write a book for a healthcare publisher, develop a national speaking career and teach online. I was doing only the things that I loved. I was living everyone’s dream.

In October, three years into this new life, I was told I had breast cancer. I froze. My adored husband stood by me every step of the way and warmed me so I could approach this as I had everything else in my life; proactively. He rubbed my feet as I was prepared to have the cancer cut from my body. I was prescribed an antidepressant and tamoxifen, the drug commonly given to breast cancer patients. My children and grandson came from both coasts to visit that holiday season. The days were full of business and overseeing the building of our new home in the mountains, a longtime dream of mine. I didn’t miss a day of radiation after the surgery. I was cancer free and went on with life, a bit giddy even.

But as I looked back at some things that had happened through the 6 weeks of radiation I came to realize that I hadn’t been as ‘together’ as I thought during that time. I had shown up for appointments a week early and missed others completely. Probably normal for anyone going through cancer treatment, I went through it like a zombie.

I had always been a visionary person, able to see an entire scenario or theory in my mind. Over the next few months I ‘saw’ more than usual, and had difficulty communicating my visions to others. Sometimes I’d start a story in the middle so others couldn’t follow me. As I held my breath I’d search for a word or a phrase, then I’d sigh and shake my head. I was embarrassing myself.  So I withdrew. I just decided not to talk as it wasn’t worth the cognitive and emotional effort. I also stopped pursuing presentations.

During this time, I heard about a famous author whose work declined over the period of her life. After an analysis of the words used early in her writing and those used when she was aged, the professionals surmised that she had acquired Alzheimer’s Disease. Hearing this made me aware that I had been struggling to write my weekly columns and the live chat sessions with my online students. I saw the pictures in my mind of what I wanted to write, but it wouldn’t come out my fingers at the keyboard. It felt like I was using baby words and that I’d had a better vocabulary in high school than now. I had always been thought of as articulate and no longer was. I became more afraid.

As a nursing home and assisted living administrator, I had seen many people in all stages of Alzheimer’s, including those fighting the early stages. I was wondering if it could be possible that I had early onset Alzheimer’s. I knew that nouns were the first words lost so I tried to analyze and diagnose myself. I didn’t dare breathe a word of my suspicions. I didn’t take my own advice to families, which is to discover Alzheimer’s early while medications can slow down the deterioration. Certainly this wouldn’t happen to me, I reassured myself. I chuckled at myself remembering that while in college I was one of the many students who took abnormal psychology 101 and thought I had every diagnosis we studied. I calmed myself, sure that my panicking was making all this worse. All I had to do was forget about it and push through my fears and it would go away. It didn’t.

I went to my regular medical appointments and never said a word. I did ask the doctor if the tamoxifen could cause weight gain as I had heard. I was summarily dismissed with, “There’s no evidence of that. You gain weight when you eat too much.” I wasn’t going to ask any more questions. And I wasn’t willing to consider stopping the tamoxifen as I thought of it as my lifesaver.

Daily I was reminded that my writing had been negatively impacted. I couldn’t form a narrative paragraph without great difficulty.  I had ceased marketing my speaking engagements and hadn’t given a presentation in months. I had become a hermit, staying away from people due to my fear of making a fool of myself. This fear of and loss of words was affecting my friendships, my career, my teaching, my writing, my self concept and ultimately my income.

Now I stood in the dining room and watched my husband turn from me, slightly shaking his head as he walked into the living room. He would never understand, so I can’t tell him how scared I am. At least with the cancer, it was tangible, and real; it could be seen and felt. This was in my mind, untouchable, and even worse, I was losing myself. I had seen so many adult children get angry at their parent as if s/he was just trying to get to them, to irritate them. I was afraid my husband was feeling that way with me. I never did find the ‘puh…’ word, went to the bathroom and cried; more frightened than ever during the past year that this had been evolving. I was now losing my beloved, too.

A few days later, I was visiting with a trusted nurse friend. I burst into tears and for the first time voiced aloud my dread: “I have had symptoms of Alzheimer’s for months.” I described them succinctly. We brainstormed that perhaps it could be side effects of some medications I was taking. Myrna zealously looked in every nursing and drug manual she had. She found nothing that could explain my experience. But Myrna, the researcher, scientist and devoted friend, didn’t give up. She called a nurse who worked where she had access to an informational, online service. Myrna described my symptoms: inability or difficulty writing narrative and word finding. After several anguishing minutes the nurse called back. Bingo! The tamoxifen can cause such symptoms, described almost exactly as I had. This time I wept with relief.

Now I had my explanation. I was loaded for a fight. That evening I confessed to my husband what I had been going through and what my plan was. He tried to understand but he had no experience with such things. Since I had been so easily sent away with my previous fears, I prepared myself to stand up to my doctor and not back down. There had to be another way to treat my cancer. I could not accept living the way I had been.

Four long days later, I saw the nurse practitioner instead of the oncologist when I went in for my bi-annual visit.  I told her about my inability to find the proper word or write narrative; and how these endangered my marriage, my friendships, my self image and my career and income. She immediately said that we could substitute another medication. I was shocked that I didn’t have to use my entire store of arguments. My reaction to tamoxifen was uncommon, but documented. It was over. Such a relief. In two weeks I was back to normal.

I had felt what it must be like to experience the slow onset of Alzheimer’s and it was the most awful thing you can imagine. Being aware of losing your mind is extremely worse than losing a body part. And I was laden with the responsibility to tell others of my experience. What would I tell them? First, if you know something isn’t normal for you, it isn’t. Help is out there. Go for it. Don’t wait. Ask for what you want. Demand what you need.

What else would I tell them? What I asked of my husband. When you see others change, suffer, struggle, tell them that something is different about them. Tell them, lovingly, that their behavior is not like them. Don’t discount them, push them away, blame them. Tell them you love them and you want to see them get help and find out what is wrong. It may well be the best gift of love you will ever give.


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